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Don't know how I can help. Any ideas, please?

(17 Posts)
ChineseFireball Fri 03-Jan-14 18:50:52

My father has a terminal cancer diagnosis and is starting to feel really poorly. He has mobility issues anyway but has had a fall and is now bedbound.

The prognosis given to him about 9 weeks ago was for 3 months.

He can't stay at home because he needs 24-hour nursing care now, really. He was previously in an intermediate care place but since these are primarily for rehab it's not really appropriate for him to be there. He is currently in hospital because he has some issues with kidney function (probably not helped because he isn't eating and has type II diabetes). They are talking about where to "put" him. A suggestion of a local nursing home has been made, and they have a bed available, but they are saying they don't think they have enough staff to look after him.

The hospice have said that they don't want him yet. I'm a bit disappointed with the hospice, actually, because initially we were told that there were all sorts of services we could access (both for my father and for us, such as day care, bereavement counselling etc) but it now seems that there is nothing that they are prepared to offer.

He feels that he is a burden to everyone and that everyone just wants rid of him - understandably, I would say.

Who should I be talking to to get some kind of sensible advice re: next steps? He's in limbo at the moment. I feel terrible for him.

NotJustACigar Fri 03-Jan-14 19:22:52

Hi ChineseFireball, I didn't want to leave you without an answer but all I can suggest is to speak to the hospital consultant and the GP. It may be that he will need to stay in hospital for a while longer if there is no place else he can go at the moment. I know it's awful and the way older people are treated in this country is absolutely shocking. So sorry you and your family are going through this.

ChineseFireball Fri 03-Jan-14 19:32:29

Thanks for replying. We have not had a good experience since his diagnosis and have had to raise an adult protection/safeguarding concern about some of the care that he has received. It's really difficult to get any information from anyone because they are all "oh we can't discuss his care with you without his permission" while he is lying right there. He's beyond caring now, or he'd jump in and tell them of course it would be fine to discuss things with us.

NotJustACigar Fri 03-Jan-14 19:49:41

It's awful and not at all uncommon, sadly. All I can suggest is that you persevere with the GP. And as incredibly difficult as it is try to be as patient as you can. Instead of feeling like you have to do something, trust that the care situation will work itself out and in the meantime try to cherish your time with your dad the best you can. Silly jokes, funny stories from childhood, old photos if he can still look at them, reminiscences about old friends. Anything to humanise the environment he's in or remind him of happier times.

ChineseFireball Sat 04-Jan-14 08:55:28

Thanks, cigar, much appreciated thanks

chestnut100 Sat 04-Jan-14 09:05:12

Do you have any support from district nurses? They are often involved in monitoring palliative care; liasing with gp and hospice, arranging hospice at home services, day/night sitters and will be able to refer you directly into locally available services. They will be able to offer all of you support and help you manage at this difficult time. May be worth investigating?

ChineseFireball Tue 07-Jan-14 02:24:18

Thanks chestnut. I have already tried the district nurse. Helpfully (!) she told me to write my concerns in his notes. That was it. I'm really very disappointed with the experience we have had throughout. Sadly there is now nothing I can do for him.

NatashaBee Tue 07-Jan-14 02:47:28

Message withdrawn at poster's request.

ChineseFireball Tue 07-Jan-14 04:56:32

Yes... macmillan told us to talk to the hospice. All very frustrating sad thank you for taking the time to respond though.

NatashaBee Tue 07-Jan-14 12:12:45

Message withdrawn at poster's request.

Itsallabout Tue 07-Jan-14 12:33:13

I'm sorry to hear about your Dad. It must be a difficult time for you all and not helped by the frustrations in dealing with future care.

Has your Dad been allocated a social worker or cancer support co ordinater? I do not live in the UK so it may be different there but I have a life limiting cancer and everything for me is organised by my Oncology Dr's,.social worker and cancer support officer. I think you need to ask for a meeting with the Oncology team and ask them about future care for your Dad.

noarguments Tue 07-Jan-14 22:50:40

This is utterly awful, and makes me incredibly angry.
While he is in hospital it will be the hospital social workers that would "manage" any potential discharge to another care setting. It doesn't sound like they're doing much to facilitate this
I'd echo what someone said about district nurses - my experience is that they liaise with services to help you stay at home. but the problem is that once he's in hospital, no community-based services seem to take an interest.
You mentioned MacMillan - is there a local macmillan nurse you can talk to face to face (rather than contact the helpline)?
What about Marie Curie?
Someone said upthread, and especially if he's not too bothered where he is, leave the various agencies to sort something out and concentrate on spending quality time with him.
So sorry you are going through this.

jessisinthegarden Fri 10-Jan-14 14:42:35

I can't offer any more advice than has already been given, but i just wanted to say how sorry I am you are going through this - it must be very frustrating, frightening and depressing sad

dramajustfollowsme Fri 10-Jan-14 14:51:41

I was going to suggest a lot of things that others have already said. I'm going through this for the 4th time, with my grandad just now. Each time, different people have help in different ways.
Has he got a palliative care nurse that might help?
Keep on at Marie Curie and Macmillan. In our area there is a local cancer charity that helps out. Is there anything like that where you are?
I made my gran a photo album of her life. When she got to the point that she couldn't speak, she could still look at photos remember and smile.
Can you get as many of his friends as poss to visit and reminisce about good times?
It is awful that you have to fight for proper care. This has been my experience with my mum, gran, dad and now grandad. I hope you find someone to help. Often one angel, will help you and open doors that were previously firmly shut.

ChineseFireball Fri 10-Jan-14 20:24:00

Thanks everyone. He's now in hospital and on a morphine syringe driver with anti-emetics. We had a call on Monday to say come and see him we did. He's still here. BUT he's still in hospital. Realistically I know that he doesn't have a lot of time left (although on Monday they gave him 24 hours, and now it's Friday...). We are trying to get him into the hospice but it's difficult because nobody talks to anyone else. The hospice told my mother on Wednesday that there was a bed available and that the palliative care nurse would talk to the hospital - but I've spoken to the hospital to see how he is today and they know nothing about it.

I've asked the staff nurse whether they can contact the hospice to arrange something proactively rather than waiting for the hospice to contact them because obviously time is of the essence. She has agreed to ring them tomorrow morning. We will see.

drama you are right about having to fight for proper care. I am disgusted at the treatment he has had at the hands of various agencies and care providers. It has been awful for him sad

kitsilano Fri 10-Jan-14 21:58:24

Message withdrawn at poster's request.

kitsilano Fri 10-Jan-14 22:00:39

V sorry posted this in this thread by mistake, I've asked for it to be deleted

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